Tuesday, November 24, 2015

VPL Shunt put back in, hard recovery, so happy!

**It appears there may be 5 incisions not the 4 I was thinking from last wks surgery, have to ask Dr.Bragg about this. But.. it seems like there are 2 under breast area, 2 along neck/area and 1 at the back of my head, where the proximal (tip) of the shunt goes in. Odd but wow and if so crazy (but grateful they do what's needed to get a good placement, as weird as that probably sounds)...
Sorry for no update after last weeks surgery - Dr.Bragg worked w the Peds General Surgeon and Anesthesia was able to (apparently if I am remembering right) do the whole surgery with just an LMA to secure airway. That admittedly floored me and made me (at the same time) a little nervous heading back to surgery. I know she was going to use some fixation device during surgery to get a good catheter placement in the ventricle at the back of my skull so maybe that helped and is why they where able to use LMA despite having to (I would think) reposition during.
All seemed to get well in surgery, though this one definitely kicked my butt as far as recovery time after! I have a bit of a difficult time as it is recovering from some of these surgeries but this one was something altogether! Per Dr.Bragg she was super happy with the placement of the catheter in the ventricle and had (If I am remembering right) really good CSF flow this time which I can believe given the noticeable difference in symptoms. =) Initially we reset the 1 shunt to drain at a high #/less CSF and apparently from what Dr.Bragg said today the new shunt must also have been set higher (drain less) than we normally go. Initially this was definitely needed and as this past wk wore on my shunt setting on the new shunt was set back down to the lowest (drains the most). The LP Shunt is apparently still got room to go down on it so that is actually a good thing (that we have room to adjust) to!
In total there are 4 incisions, 2 on my neck, 1 on my upper chest and 1 at the back of my skull where they tunnel the shunt catheter in to the ventricle. Typically we've been able to get a shunt placed with just 3 incisions but Dr.Bragg said my skin was so tough and hard to get the shunt catheter through so they needed to do more indepth access while tunneling the catheter.
Discomfort wise is actually still quite a bit, it is much improved from a week ago, when surgery was but definitely still a degree of soreness I'm not quite used to! I'd say the worst area(s) are where the shunt was tunneled in to pleural space (below R breast) and otherwise the other 3 are improved but variable, ie more discomfort than I would say is my normal (saying a lot). This all said I'd do it again in a heartbear, not even over this surgery pain but if needed this seems to be the best working shunt we've had in a long, long time! I don't feel 100% and have virtually no appetite (not sure I ate any full meals this wk and even fairly minimal snacking) but I do feel better - not 100% but sure is better than leading up to this surgery! We've had 2 shunts before in place and working but this appears to be the best! Yay!!
I actually don't know how long surgery took but however long it was, was totally worth it and even with the discomfort I am sooo, soooo glad we put the 2nd one back in AND that it seems to be working so well!
This surgery definitely played with my mind a bit, what a week (lol) for odd things or instances I would fine myself in but to feel probably 70% better all I can say is ALELUIJAH! (sorry sp)! I told my Mom today if this shunt lasted like this for 6mo I'd celebrate (and I rarely ever (if ever) do the 'maybe this will be the last time we see you/maybe this time is it' thing!
I see Dr.Bragg Thurs next wk so we'll decide then if we're going to adjust the setting on the other shunt then.

Otherwise I see Cardiology for 3mo f/up, 6mo Echo on Tues so hopefully that goes well! Thanks for stopping by,
Erica >< div class="separator" style="clear: both; text-align: center;">

Friday, November 13, 2015

Surgery Mon., (Last) Tues Shunt tap, Thurs Heart Rhythm (med) f/up, Surgery .... heartache and loss.

Heart Rhythm Appt - Ivabradine f/up
I wrote below (the other day) about the appt with Dr.Bragg to take fluid off; today (Thurs) I saw Dr.Kovach, my Heart Rhythm dr. for Ivabradine f/up re the 1/mo (essentially) med f/up.
He is opting to keep the med dose the same as on the last Holter monitor the average heart rate was down to the 80s from a average heart rate of low 100s (100-110s) and he felt even if we where to lower HR further he wasn't so sure it would help symptoms more as we've not really made a big difference in symptoms I deal with heart related.
After thinking some about the appt given heart rates at virtually all appts I have been at and the few times I've read it on the phone app I have it's still been high 80s to 100s I wonder about upping the Ivabradine to 10mgs maybe during the day and keeping the 7.5mgs at the 2nd (later in the day) dose but will ask this when I f/up with Dr.Earing in 2wks (1st of Dec., Echo and Appt).
Otherwise Dr.Kovach and I talked again about do we add back in say a beta blocker, see if that helps symptoms? Do we give this Ivabradine more time? Or do we just be done with it and say we're going to do take the risk and do a 3rd open heart (OHS) surgery despite the unknowns and risks?
It's never been done 3x's in an MPS pt. but at a certain point your sort of just treading water, getting no where in a sense and so we're trying to weight when is a good time (in a there's never going to be a good time) with my body and the MPS risks?
He planned to talk to Dr.Earing (my Cardiologist) later this afternoon (I saw him late Thurs morning) and then they or we would discuss again after the Appt on the 1st what would be our next step...
I struggle a little bit with this all, I know I appear ok enough to them and that some of my symptoms though they would make more sense to Dr.Earing b/c he's known me for so many years I don't think they are always clear cut to Dr.K.
I am hoping (even though I really do trust Dr.Kovach) that when I see Dr.Earing he will be able to shed a little better light on some of the symptoms I have been having as I think I may have had Dr.Kovach perplexed a little, which I understand I think.
I don't always do a good job painting a picture of just how bad I feel often on top of I look good. This all said I don't think it's that Dr.Kovach in any way doesn't believe me I think he's just being cautious which I am ok with, he kind of wants to see how this shunt surgery goes and he wants to talk to Dr.Earing.
In any case we'll see how the Appt with Dr.Earing and the Echo goes 12/1 and then f/up with Dr.Kovach I guess will be determined based off that appt.
Talking to Dr Bragg today (Tues), both before and while she tapped the LP Shunt (to remove CSF) she asked/commented was surgery rescheduled to Monday for sure now? I think she jsut wanted to make sure it was on the schedule and we have it planned. I know she can see it on her schedule but on her part it's more about verifying we're on the same page I think. In talking about it she said something about finally we'll get you feeling better and I commented something to the effect "less than a wk to surgery; isn't it crazy to actually be looking fwd to this surgery /wanting it to occur?"
She laughed and said something about understanding and my not being the only Patient to ever say as much. Lol, I am pretty sure I said the essential same thing to Dr.Kovach today which he knows this has been in the works for some time. Lol, I think he got it to why I'd be kind of looking fwd to it being done without actually looking fwd to the surgery itself. Still it IS crazy and I know it!!!
Dr.Kovach's Nurse asked me at the Appt today (Thurs) "Do you like being there?" (in the hospital) - I am pretty sure I tried to not bust out laughing but said something to the effect if it weren't for the cleaning/not being able to clean myself (floors especially, broom anyone?) I could perhaps stand it a little better as I do get along w the majority of the Nurses and Staff fine and a few of the Nurses who traditionally ask to be on my 'Care Team' go out of their way to make it all more bearable which does indeed help. Still there's nothing like being at home! I can tolerate it but I am not a fan of hospitals.
I didn't ask Dr.Bragg, honestly, that would seem nosy to me but non-the-less Dr.Bragg said the reason she'd had to cancel and reschedule Thurs's surgery was her Husband's Mom had gotten sick unexpectedly and Weds was the 1st day she and her Husband where able to get flights to CA (where he is from, Dr.Bragg is originally from Chicago suburb).
No matter why she would have to reschedule and as much as I want surgery to just be done I could never be upset at her for needing to unexpectedly go out of town AND is sweet on her part she cared enough to send me a msg last wk + explain today.
For that matter for her to see me today for the shunt tap on her non-clinic day when she wouldn't have had to was very nice.
Just a few more days, God willing to (hopefully) feeling better.. The plan at this point is to place a VPL (Ventriculopleural) Shunt w Peds General Surgery assisting her for the portion of surgery where she'll place the shunt catheter in to the area around the lung space (due to so many previous surgeries and drain tubes) in this area causing scar tissue.
The head (brain/ventricle) portion of the shunt placement Dr Bragg said previously she planned to use a system where she can place my head in a static immovable position (I think it may be similar to what is used during C-spine/neck surgeries) as she said it's what they use in brain tumor surgeries to prevent any movement of the head.
They use that to try and get the the best placement of the shunt catheter in to the ventricle (unsure if it's the lateral or the 4th ventricle she's placing the proximal shunt catheter in) but placement will be at the back of my head.
She uses a computer and neuro-endoscope to get a good, direct view inside of the ventricle for best placement of the shunt, trying to avoid problems we've had in the past w this particular ventricle/placement.

I'll be saying my prayers! =)

Seprately on a really sad, not very great news note and has made this surgery harder still, my Grandma who has been sick and in a nursing home for several years now passed away Thurs. night. For her sake it's actually probably better, she's free of earthly pain and suffering and in a place, so, sooo very much better than earth. She's reunited with her husband my beloved Grandpa and above all in the glorious realm of God our heavenly father.

I know God has a purpose for everything but that doesn't make it easier to understand. I trust in God and I believe he has a purpose but it doesn't make my tears of loss any less. I worry about next wks surgery and not being there for the funeral. I don't think I need to be there to remember and to have memories of my Grandma but it does kind of suck. And I worry most about not being there for my Mom. She doesn't say much about it and doesn't share her emotions a lot (we share this trait in our family, hiding how we feel) but my Sister and I have talked several times about Monday's surgery and the funeral arrangements and we both worry about Mom and can tell she's upset. Why wouldn't she be though, that is her Mother and even if Grandma hasn't been the same for a long while that is Mom's Mom.
Anyways sorry to make this kind of a downer end and all, if you could keep my Mom and family in your prayers. I've prayed about it, talked to my Mom about it, talked to my Dad some and especially talked to my Sister about it and have decided to just go ahead and go forth with Monday's surgery. This means missing my Grandma's funeral but I know her spirit isn't there anyways. It is my Mom I really worry about with it all.
Ultimately even in In all things we may not understand God truly is good, and atleast we know in him a better place awaits for those we love and lose and who have had a faith in God.
Erica ***On a add in note, INR today per Cardiology was down to 1.41 after being off for just a day (last dose was Weds) so Dr.Bragg's NP said I did not have to re-check another level before Monday's surgery. Arrival time for surgery is 10:00 with surgery at 12:00, obviously this could vary a little given it is after Dr.Bragg's clinic and not a surgery day for her.
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